Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 , This is a little late, but you remain in my thoughts. I am glad you have such good nurses taking care of J.D. Kristy update Just wanted to give you an update on the kids. Livie and J.D. got lots of gifts for christmas. Livie was suppose to spend time with her bother on Christmas Day. The nurses thought that J.D was coming down with something so she couldn't spend time with him. But she did get to see Santa at the hospital. Everyone was so good to us and bought J.D. and Livie gifts. J.D. is doing better now, nothing has come back on him which means that he just probably was having a bad day Christmas Eve, which is very very weird. Okay, that same day, Livie was having a bad day too, my family came over and all they wanted to do is hold her and it was pass the baby around. This got her very fussy and I had a hard time getting her to settle down. Anyways, J.D. is scheduled to have his trach put in on Wednesday. I'll keep you posted. Love , , Livie, J.D. 3 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 Kate, Dylan was born with his torticollis. He rarely moved in utero. His usual was less than what they tell you to let the doctor know about later in pregnancy. He was in the same position so long that there was even atrophy on one side of his chin. Plus there is the webbing of the shoulder problem, so I think even without the hearing and vision loss and " posturing " that it can be a problem. I am glad you take the time to look for more info about your client's needs, that little bit that is learned from life, rather than text books and medical journals. Kim > I was not reading up when the posts about torticollis occurred. I > was not aware that it was common with CHARGE, although it makes > sense, due to the visual and hearing complications, as well as the > fact that the more medical complications might mean that the baby > spends more time on his or her back (especially with breathing > problems). > > Michele, thanks for the vote of confidence. To me, it is all of you > who are the heros and the angels. If I can help someone just one > step down a long and difficult road, then I have accomplished > something. I have heard so many horror stories from parents about > lack of hope and poor prognosis, as well as lack of information in > general (many from people on this list), that I NEVER want to be a > part of that. Its hard enough--if I can provide a little > information, or a phone number for services, or even to just know > what its all about so the parent doesn't have to explain it all > AGAIN, then hopefully their day will be slightly easier. Who > doesn't need that? > > Happy New Year to all! > > Kate (PT to a CHARGEr, mom to Jake, wife to Pat) > >> >> Kate- >> Just a quick FYI -- several kids on the list here have had > torticollis. >> Don't know if you were online when they were posting about it. I > think it's >> not uncommon in CHARGE. >> >> BTW -- It's nice to have you back. I admire professionals like > you who take >> the extra step to know their patients. You are the angels in our > lives. >> >> Michele W >> Aubrie's mom 8 yrs >> > > > > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or email > info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Hello all, Well we just got back from a follow up appointment with my son Mark 22. I am not sure if you recall but last year at this time he broke his hand in an uncontrollable fit when the Dr's office was closed. Well she put him on a 3rd behavioral medication and he has done wonderful on it. His SIB have decreased 80%. Guess what he gained 23 lbs in one year! She was very concerned. She drew blood work, ordered a baseline bone scan and mentioned an endocrine Dr possibly. So now we are off and running with the new problems encountered with adult CHARGE'rs. I would never dreamed my " failure to thrive " baby would not be overweight. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 , I just recently took a health course in University; one of the guest speakers ran a childhood obesity clinic. He stated that many babies who come in as " failure to thrive " end up in his obesity clinic later on. He said usually they are the babies who are VERY particular and will only eat certain things (which may be not the healthiest, etc) and so we let them have as much as they want because they are " failing to thrive " and then that same pickiness can cause them to become overweight/etc when they are older. I hope you get everything straightened out and nothing too serious comes of it. Weir Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 , this is great news--for you and for Mark.. I am sure HE is feeling much better, too!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 , I forgot to ask what is the new med? pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 Pam, Mark was already on Wellbutrin SR and Topamax then Trazodone was added. (Deseryl) He is also on 3 medications for his bladder. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 Martha, When Mark was first put on the medication he frequently slapped his face HARD. For no apparent reason sometimes he would swing his arms up and smack his forehead. He in the one serious injury hit his hand on the door of the van while swinging and failing around out of control and broke his hand ( more of a buckle fracture) He did these behaviors all the time. He was put on the med and he improved dramatically we were shocked! I am content with it and hope it works longer for him, and us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 , I am hoping, as I am sure you are, that the meds continue to work for Mark. You and he have been down a long road and here's hoping it is to stay smooth for a while. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 : Do you ascribe the change in SIB, etc. to the Trazedone? takes this to help with sleep, but her SIB has subsided for many months now quite considerably. I hadn't thought of a connection. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 Flagyl truly tastes horrible! You can try chocolate syrup, pudding, mixing it in anything soft! My older son once asked the pharmacist to make it in liquid form - that was really bad! The Flagyl is a really good medicine though - small consolation!! Good luck! It is wonderful that you are happy with his new doctor and the care he is receiving! Take care. Joanne (, Ca) they put him on flagyl/generic. He hates the meds > because of their bitter taste and is refusing to take them. I offered to > hide them in a hot dog like we do meds for the dogs but he didn't bite! Quote Link to comment Share on other sites More sharing options...
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